Myelodysplastic Syndromes

Myelodysplastic Syndromes

Also called: Smoldering Leukemia, Myelodysplastic Disorders, Preleukemia

Reviewed By:
Mark Oren, M.D., FACP

Summary

Myelodysplastic syndromes (MDS) are a group of diseases that affect the body’s blood-making system. Although they were considered to be a different type of disease for many years, most hematologists (physicians who specialize in diseases of the blood and blood-forming tissues) now consider MDS to be a form of cancer. In addition, MDS progresses to acute myeloid leukemia (a cancer of bone marrow cells) in approximately 30 percent of patients. As a result, some physicians consider it an early form of the disease.

Bone marrow is the soft, inner component of bones, where white blood cells, red blood cells and platelets are formed. In patients with MDS, the bone marrow fails to produce enough normal blood cells. Over time, the shortage in normal blood cells can result in anemia, bleeding disorders and a decreased ability to fight off infection.

The exact cause of MDS has not been identified. Researchers, however, have gained a greater understanding of how specific changes in DNA (deoxyribonucleic acid) can cause cells to develop into MDS. A number of risk factors have also been identified, including age, smoking and environmental exposures such as radiation or certain chemicals. In addition, patients treated with chemotherapy or radiation for other cancers have a higher risk of developing MDS.

Symptoms of MDS vary depending on where it has spread in the body. General signs and symptoms include weight loss, fever, loss of appetite and weakness.

MDS may be first diagnosed in routine blood tests. However, additional tests may be necessary, including bone marrow tests and a complete blood count. The treatment and prognosis (outlook for recovery) for MDS depends on the subtype of the disease, as well as certain additional factors including the patient’s age. Treatment may include bone marrow/stem cell transplantation or a form of supportive therapy (e.g., blood transfusion, antibiotics), used to treat the symptoms or complications of the disease.

The exact number of MDS cases in the Unites States is unknown because there is no registry tracking system for the disease. The American Cancer Society (ACS) estimates that there are between 10,000 and 15,000 new cases each year. The disease is more common in the elderly, with about 80 to 90 percent of cases occurring in patients over the age of 60. MDS rarely occurs in young adults.

About myelodysplastic syndromes

Myelodysplastic syndromes (MDS) are a group of diseases of the blood and bone marrow. They are caused by abnormal blood-forming cells of the bone marrow.

Bone marrow is the soft, inner component of bones. It is composed of blood-forming cells, fat cells and tissues that support the growth of blood cells. All forms of blood cells are produced in the bone marrow from a cell called the stem cell. Blood cells produced from stem cells in the bone marrow include:

  • White blood cells (cells that fight infection). The three main types of white blood cell include:

    • Granulocytes (neutrophils, basophils and eosinophils)

    • Monocytes
    • Lymphocytes

  • Red blood cells (cells that carry oxygen to tissues all over the body).

  • Platelets (cells that help develop blood clots and control bleeding).

In patients with MDS, however, the bone marrow cannot effectively manufacture blood cells. Instead, many of the blood cells produced are defective and they fail to mature into normal red blood cells, white blood cells or platelets. The body usually destroys the abnormal cells in the bone marrow, or shortly after they enter the bloodstream. As a result, patients with MDS have shortages of blood cells. These shortages may lead to infection, anemia and bleeding disorders.

In the past, MDS were not considered to be cancer because MDS cells differ from cancer cells in some ways. Cancer cells, which usually live longer than normal cells, build up and crowd out normal cells. Although MDS cells may also accumulate, they do not function normally and die more easily than normal cells.

Today, most hematologists (physicians who specialize in diseases of the blood and blood-forming tissues) classify MDS as a form of cancer. It is considered to be a clonal disease, which is a large group of abnormal cells that share identical growth properties and come from a common abnormal mother cell. This characteristic is often observed in cancers where the group of abnormal cells appear to have developed from a single abnormal cell.

Another reason for the classification of MDS as cancer, according to the American Cancer Society (ACS), is that approximately 30 percent of MDS cases eventually progress into acute myeloid leukemia (a cancer of bone marrow cells). Although the diseases may never progress into leukemia, some physicians believe MDS is an early form of the disease. In fact, the diseases were known as preleukemia or smoldering leukemia in the past.

Cases of MDS are not tracked, and as a result, the exact number of MDS cases occurring each year in the United States is unknown. According to the ACS, most estimates are between 10,000 and 15,000 new cases each year. Approximately 80 to 90 percent of patients with MDS are over the age of 60. The diseases rarely occur in young adults.

Types and differences of MDS

The World Health Organization (WHO) developed a system to classify the different types of myelodysplastic syndromes (MDS). The classification system is based on the appearance of the cells in the bone marrow, as well as circulating blood cell counts. The system is also used for predicting prognosis (outlook for recovery) based on the type of syndrome. There are eight types of this disease with different causes, symptoms and prognosis. Types of myelodysplastic syndromes include:

  • Refractory anemia.

    • Patients have only anemia.

    • Only the early (immature) cells that develop into red blood cells have an abnormal appearance (dysplasia) under a microscope.

    • The number of blasts (early precursor cells) is normal, measuring less than 5 percent.

    • Some of the red blood cells in the bone marrow may contain detectable iron deposits that form a ring structure (ring sideroblasts), but the amount of ring sideroblasts in the bone marrow is less than 15 percent.

    • Approximately 5 to 10 percent of all MDS patients have refractory (unresponsive to treatment) anemia.

    • This type rarely progresses to acute myeloid leukemia (AML).

  • Refractory anemia with ringed sideroblasts.

    • This condition is similar to refractory anemia except the amount of ring sideroblasts in the bone marrow is greater than 15 percent.

    • Approximately 10 to 15 percent of all MDS patients have this type.

    • This type rarely progresses to AML.

  • Refractory cytopenia (low blood count) with multilineage dysplasia.

    • At least two types of  blood cell counts are low.

    • Two of the cell types in the bone marrow have an abnormal appearance (dysplasia) under the microscope.

    • The number of blasts is normal, measuring less than 5 percent.

    • The number of ringed sideroblasts in the bone marrow is less than 15 percent.

    • Approximately 25 percent of people with MDS have this type.

    • This type progresses to AML in approximately 10 percent of patients.

  • Refractory cytopenia with multilineage dysplasia and ringed sideroblasts.

    • At least two of the three types of blood cell counts are low.

    • Two of the cell types in the bone marrow have an abnormal appearance (dysplasia) under a microscope.

    • The number of blasts is normal, measuring less than 5 percent.

    • The number of ringed sideroblasts in the bone marrow is greater than 15 percent.

    • Approximately 15 percent of people with MDS have this type.

    • This type progresses to AML in approximately 10 percent of patients.

  • Refractory anemia with excess blasts-1 (RAEB-1).

    • Any one of the three cell types can be low and look abnormal under a microscope.

    • The number of blasts is abnormal, and is greater than 5 percent but less than 10 percent.

    • Approximately 40 percent of people with MDS have type 1 or type 2 refractory anemia with excess blasts.

    • This type progresses to AML in approximately 25 percent of patients.

  • Refractory anemia with excess blasts-2 (RAEB-2).

    • Any one of the three cell types can be low and look abnormal under a microscope.

    • The number of blasts is abnormal, and is greater than 10 percent but less 20 percent.

    • Approximately 40 percent of people with MDS have type 1 or type 2 refractory anemia with excess blasts.

    • This type progresses to AML in approximately 33 percent of patients.

  • Myelodysplastic syndrome associated with isolated del(5q).

    • Patients have only anemia.

    • There is a deletion (the loss of part of a chromosome) in part of chromosome 5.

    • This type has a very good prognosis (outlook for recovery) and rarely progresses to AML.

  • Myelodysplastic syndrome, unclassified (MDS-U).

    • Any one of the three cell types can be low and either the white blood cell or the megakaryocyte (platelet forming) cell series look abnormal under a microscope.

    • The number of blasts is normal, measuring less than 5 percent.

    • The group does not fall into one of the other myelodysplastic syndrome categories.

    • This type is uncommon and rarely progresses to AML.

Myelodysplastic syndromes can be further classified as primary or secondary. Primary myelodysplastic syndromes are diseases in which the patient has no apparent risk factor. Secondary myelodysplastic syndromes are diseases which can be linked to several risk factors. Secondary myelodysplastic syndromes are much less likely to respond to treatment.

Chronic myelomonocytic leukemia, atypical chronic myeloid leukemia and juvenile myelomonocytic leukemia are three diseases that were once classified as MDS. Now known as myelodysplastic myeloproliferative diseases(MDS MPD), the conditions were given their own category because they do not fit into the MDS category. Unlike MDS, these diseases resemble myeloproliferative diseases (e.g., leukemia) and produce too many white blood cells.

Risk factors and causes of MDS

The exact cause of myelodysplastic syndromes (MDS) has not been identified. However, researchers have gained a greater understanding of how specific changes in DNA(deoxyribonucleic acid)can cause bone marrow stem cells to develop into MDS.

DNA is the genetic material that houses instructions for all of the body’s chemical processes. Some forms of cancer are caused by DNA mutations that “turn on” oncogenes (genes that speed up cell division) or “turn off” tumor suppressor genes (genes that slow down cell division or cause cells to die at the right time). In people with MDS, mutations may occur from exposure to radiation or cancer-causing chemicals, but many times the mutations occur for no apparent reason.

Another form of DNA abnormality that can cause MDS to develop is a translocation. A translocation is the transfer of DNA from one chromosome to another. This abnormality can turn on oncogenes, which causes rapid cell division, or turn off tumor suppressor genes. Additional abnormalities that may be found in patients with MDS include:

  • Additions. Part of a chromosome is duplicated and too many copies of it are found within the cell.

  • Deletions. The loss of part of a chromosome.

In addition, researchers have identified a number of factors that may make a person more likely to develop MDS. These risk factors include:

  • Age. Being over the age of 60 is considered a risk factor for MDS because most patients with MDS are elderly.

  • Chemotherapy. Patients treated for other cancers with certain chemotherapy drugs are at an increased risk of developing MDS. The risk is even greater for those treated with a combination of chemotherapy and radiation therapy. MDS that occurs after treatment for an earlier cancer are known as secondary MDS. They most often develop after treatment for Hodgkin’s lymphoma, non-Hodgkin’s lymphoma and childhood acute lymphocytic leukemia (ALL). Secondary MDS sometimes occur following treatment for other cancers, including breast cancer, lung cancer, testicular cancer and ovarian cancer.

  • Smoking. Tobacco smoke contains cancer-causing substances (carcinogens) that are absorbed by the lungs and spread through the bloodstream to numerous parts of the body. As a result, smoking increases the risk of developing a number of cancers, including MDS.

  • Exposure to very high levels of radiation. Patients who have received radiation therapy as treatment for other forms of cancer have an increased risk of developing MDS later in life. In addition, people exposed to radiation from atomic blasts (such as those in Japan during World War II) and nuclear accidents have an increased risk of developing MDS.

  • Benzene. Benzene is a colorless, flammable liquid used primarily as a solvent and a gasoline additive. It is also a component of cigarette smoke. Long-term exposure to the chemical can increase a person’s risk of developing MDS. Long-term exposure to certain other chemicals used in the petroleum and rubber industries can also increase the risk.

  • Fanconi’s anemia. This condition affects the bone marrow, resulting in decreased production of blood cells. People with this condition are more likely to develop MDS.

  • Family history. MDS has been found to occur frequently in some families.

  • Gender. MDS occurs slightly more often in men.

Although MDS is associated with these risk factors, many patients with the diseases have no known risk factors.

Signs and symptoms of MDS

Myelodysplastic syndromes (MDS) can cause a variety of signs and symptoms. General signs and symptoms include:

  • Unexplained weight loss
  • Fever
  • Loss of appetite
  • Weakness

Other signs and symptoms may develop from the reduction of normal red blood cells, white blood cells and platelets caused by the disease. Anemia (an abnormally low amount of red blood cells) can trigger a variety of signs and symptoms including:

  • Shortness of breath
  • Fatigue
  • Jaundice or yellow skin and eyes
  • Pale skin

The decrease in the amount of normal white blood cells decreases the patient’s defense against infection. As a result, infection may be a sign of the disease.

Thrombocytopenia (an abnormally low amount of platelets) can lower a patient’s ability to repair holes in damaged blood vessels. Signs and symptoms of thrombocytopenia include:

  • Excessive bruising or bleeding
  • Frequent or severe nosebleeds
  • Bleeding gums
  • Petechiae (pinpoint spots of blood under the skin)

In many patients, MDS may not cause early symptoms and the diseases may be found during routine blood tests. When early symptoms of MDS do occur, they may be overlooked because they resemble symptoms of more common illnesses, such as influenza. Patients are encouraged to contact their physician when they experience any symptom of MDS. The earlier the disease is diagnosed, the earlier treatment may begin.

Diagnosis methods for MDS

When physicians suspect that a patient may have a myelodysplastic syndrome (MDS), they will obtain a detailed medical history and perform a physical examination.

A variety of tests may be ordered to diagnose, classify, and monitor the disease. Establishing the exact type of MDS is important because the different subtypes vary in their treatment and their prognosis. Samples of cells from the patient’s blood and bone marrow will be examined to verify the diagnosis. Additional tissue and cell samples may also be needed to guide treatment and determine if the disease is progressing into acute myeloid leukemia (AML).

Common tests include:

  • Complete blood count (CBC) and blood smear. A CBC is a blood test that measures the number of red blood cells, white blood cells and platelets in a sample of blood, as well as the amount of hemoglobin in the red blood cells and a number of other factors. A blood smear is the examination of cells under a microscope. Changes in the numbers of blood cell types can suggest MDS.

    When examined under a microscope, blood cells from MDS patients may also have certain abnormalities in size, shape and other features. In addition, patients with the RAEB (refractory anemia with excess blasts) type of MDS may also have a small number of myeloblasts (an early form of white blood cell) in the blood.

  • Bone marrow aspiration and biopsy. A bone marrow aspiration involves using a thin needle to collect a small sample of liquid bone marrow under local anesthesia. A bone marrow biopsy uses a larger needle to remove a piece of bone marrow. Usually performed at the same time, these procedures may be ordered to determine if a MDS is present and to classify the disease. In order for a diagnosis of a MDS to be made, a patient must have less than 20 percent blasts in the bone marrow. The procedures may also be ordered after diagnosis to monitor treatment or determine if the disease is progressing into AML.

  • Cytochemistry. This procedure involves placing a sample of blood or bone marrow on glass microscope slides. The slides are then exposed to stains (dyes) that are attracted to certain chemicals present in some types of MDS cells. Although one stain may cause a particular type of MDS cell to appear with black spots when examined under a microscope, it does not cause color changes in other types of cells.

  • Flow cytometry. This procedure uses fluorescent antibodies to detect certain molecules on the surface of MDS cells. If specific cells are present, the antibodies will give off light when the sample is passed in front of a laser beam. The cells are measured and analyzed by a computer for the presence of antibodies. This is a very accurate test for determining the exact type of MDS present in a patient.

  • Immunocytochemistry (immunophenotyping). This procedure uses special antibodies to detect certain molecules on the surface of MDS cells. When specific cells are present, color changes can be detected under a microscope. As with flow cytometry, this test is used to help distinguish types of MDS from one another and from other diseases.

  • Cytogenetics. This test uses a microscope to evaluate the characteristics of cells including their formation, function and structure. It may be ordered to determine if the cells have too many chromosomes or if the chromosomes have any abnormalities. Abnormalities commonly found in MDS cells include translocations (transfer of DNA from one chromosome to another), deletions (part of a chromosome is lost) and additions (part of a chromosome is duplicated and too many copies of it are found within the cell).

  • Molecular genetic studies. These tests examine MDS cell DNA for translocations. In some cases, the tests may reveal translocations unable to be detected with cytogenic testing.

In addition to diagnosing and classifying MDL, cytogenetics and molecular genetic studies are also useful in determining a person’s risk of developing cancer. Genetic tests are available to identify some genetic abnormalities, and additional genetic tests are being developed.

Treatment options of MDS

As with all cancers, treatment for myelodysplastic syndromes (MDS) is usually coordinated by a cancer care team, headed by a medical oncologistor hematologist. There are a variety of methods used to treat MDS and their symptoms and complications. The exact treatment method chosen for each patient depends on the type of MDS, as well as certain prognostic factors including the patient’s age and overall health.

Common treatment methods for MDS include:

  • Bone marrow/stem cell transplant. Transplantation of bone marrow cells or peripheral blood stem cells. Patients who undergo transplantation receive an infusion of healthy stem cells through a vein after either high-dose or low-dose chemotherapy or radiation therapy. The chemotherapy or radiation treatments allow the transplant to take hold, grow and replace the abnormal bone marrow.  When used to treat MDS, the stem cells must come from a matched donor.

    This procedure is considered the best, and in most cases the only curative treatment for people with MDS. According to the American Cancer Society (ACS), approximately one-third of MDS patients receiving allogenic bone marrow/stem cell transplantation may be cured. However, approximately one-fourth to one-third of the patients may die from complications of the treatment. The outlook for a cure is best for young patients whose MDS has not begun to progress into acute myeloid leukemia (AML).  This procedure is still fairly new and complex and cannot be used with all patients.

  • Chemotherapy. Uses powerful drugs to destroy cancer cells. When used to treat MDS, a combination of drugs may be used. In general, chemotherapy has had limited success in treating MDS. One drug known as azacytidine, however, has been beneficial for some MDS patients. Chemotherapy may be given to a small number of MDS patients, particularly those at a high risk of developing AML.

  • Angiogenesis inhibitors. Interfere with the growth of blood vessels which stimulate cancer growth. Some types of angiogenesis inhibitors have been shown to slow the progression of MDS in some patients.
  • Differentiation agents. Cause immature bone marrow cells (blast cells) to mature. Some of these agents have proven useful in treating individuals with MDS.

In some MDS patients, including elderly patients who may also have additional medical disorders, bone marrow or stem cell transplant may not be a treatment option. In situations where no curative option is available, the goal of treatment may be to relieve symptoms and complications of the disease. Known as palliative or supportive therapy, these treatments may also be used to treat the symptoms and complications of patients with favorable outlooks as well. Treatment options that may be used to relieve or prevent the complications of MDS include:

  • Blood transfusions. Blood or blood products are infused into the patient through a vein to replace blood cells destroyed by disease or treatment.

  • Blood cell growth factors. Hematopoietic growth factors are hormone-like substances that stimulate blood cell production in the bone marrow. Growth factors, including erythropoietin and granulocyte colony stimulating factor (G-CSF), may be given to MDS patients to increase the number of blood cells and lessen the effects of anemia or frequent infections.

  • Hormones. Proteins that control most body functions. Hormones, including glucocorticoids and androgens, may be given but are usually ineffective.

  • Antibiotics. Because patients with MDS may have low white blood cell counts and may be more likely to develop an infection, antibiotics may be recommended to treat any known or suspected infections.

Following treatment, patients typically require regular follow-up visits to their physician. Frequent checkups enable the physician to detect any signs of infection or progression of the disease into leukemia. Follow-up exams also allow a physician to detect any short-term and long-term effects of treatment. Checkups may include a physical examination and laboratory tests of the blood and bone marrow.

Prevention methods of MDS

There are no specific ways to prevent myelodysplastic syndromes (MDS). Avoidance of controllable risk factors offers the only possibility of preventing the disease. Smoking is the biggest controllable risk factor for MDS, and not smoking offers the best opportunity to prevent it.

Avoiding the chemical benzene can also reduce a person’s risk of developing the disease. However, many experts agree that occupational and environmental chemicals are responsible for only a small number of MDS cases.

Although chemotherapy and radiation therapy for other cancers can cause secondary MDS, the life-saving benefits of these treatments should be carefully weighed against the small risk of developing MDS later in life.

Ongoing research

There is a great deal of research being conducted in the area of myelodysplastic syndromes (MDS), including clinical trials and scientific studies. Areas of research for MDS include:

  • Genetics. Researchers are trying to discover how changes in a person’s DNA(deoxyribonucleic acid)can cause normal bone marrow cells to develop into abnormal MDS cells. Recent studies have found a mutation of a gene known as JAK2 in many patients with myelodysplastic disorders. As more information is uncovered, researchers may eventually use their findings to develop gene therapy. This method replaces the abnormal DNA of cancer cells with normal DNA to restore normal control of cell growth.

  • Stem cell transplant. Researchers are searching for ways to increase the effectiveness of stem cell transplantation, as well as reduce complications and determine which patients benefit most from the procedure.

  • Chemotherapy. New chemotherapy drugs are being studied for treatment of MDS. Other studies have focused on determining the most effective combination of drugs while avoiding unnecessary side effects. In 2005, the U.S. Food and Drug Administration (FDA) approved the drug lenalidomide for individuals with certain forms of MDS. Researchers are also trying to determine whether patients with a poor prognosis may benefit from more intensive chemotherapy.

  • Growth factors. Hematopoietic growth factors are hormone-like substances that stimulate blood cell production in the bone marrow. Researchers are studying growth factors that can promote the production of platelets. Additional studies are trying to determine the best method to predict which patients will benefit from growth factors.

  • Differentiating agents. Differentiating agents are drugs that cause bone marrow blasts (immature cells) to develop into mature blood cells. Researchers are testing several differentiating agents including retinoids (chemicals related to vitamin A) and vitamin D. They are studying the best methods of combining these agents together or with other treatments. Arsenic trioxide is also being studied.

  • Immune suppression. Researchers are studying the role of the immune system in the development of MDS. Some evidence suggests that the disease may be caused by an abnormal reaction of the immune system.

  • Angiogenesis inhibitors. These drugs interfere with the growth of blood vessels. As they become available, new types of angiogenesis inhibitors are being tested for treatment of MDS.

Staging myelodysplastic syndromes

Most types of cancer are classified by a process known as staging. Staging assigns numbered stages to cancers based on tumor size and how far the cancer spreads from the original site. Myelodysplastic syndromes (MDS), however, are not staged because they usually spread throughout the bone marrow.

Instead, the prognosis and treatment options for MDS depend on a number of factors, including:

  • Whether a previous cancer treatment caused the myelodysplastic syndrome

  • The amount of blast cells in the bone marrow

  • Whether one or more types of blood cells are involved

  • Certain changes in chromosomes

  • Whether the myelodysplastic syndrome is untreated or has recurred

  • Whether the disease has progressed after treatment

  • The patient’s age

  • The patient’s general health

One system used to predict the prognosis of MDS patients is the International Prognostic Scoring System (IPSS). The system rates three factors:

  • The percentage of blasts in the bone marrow

  • Whether chromosome abnormalities are present, and if so, the type of abnormality

  • How low the patient’s blood counts are

Information regarding these factors is then used to give the patient a score and group the patient into a prognosis category. For the percentage of blasts, scoring values include:

Percentage of BlastsScore
Less than 5 percent0
5 percent-10 percent0.5
11 percent-20 percent1.5
21 percent-30 percent2.0

Percentages of blasts above 30 percent are not represented in this scoring system because patients with a blast percentage over 30 percent have acute myeloid leukemia (AML).

Scoring values regarding chromosome abnormalities include:

Chromosome FindingsScore
Good0
Intermediate (neither good nor poor)0.5
Poor1.0

In this scoring system a good finding is defined as having either:

  • A normal set of 23 chromosomes.
  • A set having only a partial loss of chromosomes  No. 5 or No. 20.
  • The loss of the Y chromosome.

Poor is defined as having either:

  • Loss of one of the No. 7 chromosomes.
  • Addition of a No. 8 chromosome.
  • Three or more total abnormalities.

Scoring values regarding blood counts are based on three findings:

  • The number of neutrophils is less than 1,800 per microliter.

  • The number of hematocrit is less than 36 percent of red blood cells in total body volume.

  • The number of platelets is less than 100,000 per microliter.

Based on these findings, scoring values regarding blood count include:

Number of FindingsScore
None or 10
2 or three0.5

The three individual score values are then combined to determine the IPSS score. The prognoses based on the IPSS scores include:

ScorePrognosis
0Low-risk
0.5-1INT-1 (Intermediate-risk)
1.5-2INT-2 (Intermediate-risk)
2.5 or greaterHigh-risk

According to the American Cancer Society (ACS), the median survival times for patients with MDS include:

AgeLow-riskINT-1INT-2High-risk
Below 6011.8 years5.2 years1.8 years0.3 years (less than
4 months)
Above 604.8
years
2.7 years1.1 years0.5 (6 months)

Another way of predicting survival times was developed by German authors. This system, which provides survival times based on the type of disease, includes:

Type of MDSMedian Survival
Refractory anemia5.5 years
Refractory anemia with ringed sideroblasts5.5 years
Refractory cytopenia with multilineage dysplasia3 years
Refractory cytopenia with multilineage dysplasia and ringed sideroblasts3 years
Refractory anemia with excess blasts-1 (RAEB-1)1.5 years
Refractory anemia with excess blasts-2 (RAEB-2)1.0 years
Myelodysplastic syndrome, unclassified (MDS-U)3.7 years
Myelodysplastic syndrome associated with isolated del(5q)10 years

Although this system provides a basis for predicting prognosis, additional prognostic factors (e.g., age, general health) will increase or decrease a patient’s survival time.

According to the National Cancer Institute (NCI), MDS may also be grouped for treatment based on why the disease developed. This system describes MDS as:

  • De novo myelodysplastic syndromes. MDS that develop without any known cause.

  • Secondary myelodysplastic syndromes. MDS that develop after treatment for a previous cancer with chemotherapy or radiation therapy, or after exposure to radiation or certain other cancer-causing chemicals (carcinogens).

  • Previously treated myelodysplastic syndromes. MDS that has not improved after treatment.

Questions for your doctor about MDS

Preparing questions in advance can help patients have more meaningful discussions with their physicians regarding their conditions. Patients may wish to ask their doctor the following questions about myelodysplastic syndromes (MDS):

  1. What tests will I receive to diagnose MDS?

  2. How will the tests be performed?

  3. What type of MDS do I have?

  4. What are the treatment options for this disease?

  5. What are the risks associated with the treatment?

  6. Will I need a bone marrow or stem cell transplant?

  7. Can I donate my own bone marrow or stem cells?

  8. How can a compatible donor be located if I need one?

  9. What are the chances that my disease will progress to leukemia?

  10. Can I make any lifestyle changes that will lower my risk of this progression?

  11. What is the prognosis with my type and stage of MDS?

  12. Am I a candidate for any clinical trials?

  13. Can you refer me to a support group for MDS?

  14. Do my children have a greater risk of developing MDS?

  15. Should they undergo genetic testing?
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